Nathan, I love your guts (even though they suck)


If you’re on Facebook and don’t have me hidden or anything, you probably already know that last week Nathan went in for an endoscopy/colonoscopy to try to get to the bottom of some chronic GI issues. I finally got a call back from the GI specialist today with an update, so I thought I would share since many of you have expressed interest in what’s going on with him.

The GI doctor explained to me that the procedure went well and he didn’t really see anything super obvious to explain Nathan’s symptoms. He did see some “bumpiness” in the intestinal tract which he said CAN be normal in children, though Nathan had more bumps than what he would consider to be normal. He told me that there are doctors that may prescribe steroids to treat this type of thing, but that he doesn’t really see a case for it and does not feel confident in giving any diagnosis at this time. The bumps more than likely signify an allergic response, so his recommendation is to follow up with an allergist and have more extensive allergy testing done.

We are working on getting an allergy test for him that will cover a wider variety of foods and common allergens. His doctor is ordering a test that will look for something like 150 allergens. Previously, his pediatrician has done one test for like 7 foods and then the GI doctor did a test for 19 foods (some of the foods overlapped with the 7 food test, so we’ve probably only tested for about 25 foods). So far, we know that he is highly allergic to egg whites and peanuts. He is moderately allergic to oats and mildly allergic to wheat, milk, soy, rye and barley. There are several foods that showed reactions in the category that they say he MAY be experiencing reactions or may not be, so we’ll kind of have to guess and check on those. We may be able to let him have these foods on a 4 day rotation. These include beef & chicken. I also suspect he has an allergy to almonds, though this food has not yet been tested (he seems to be doing a little better with it out of his diet though).

My plan is to get the additional allergy testing done, remove allergens, and then give it a few months to see if his symptoms improve through diet alone. If they do not, I have located a GI specialist in New York that specifically works with kids on the autism spectrum and is very familiar with the many GI issues kids on the spectrum face and is well respected in his field. If Nathan’s symptoms do not improve through diet, we will take him to the New York specialist for a second opinion.

I am also working on cleaning up our home. I don’t mean vacuuming and whatnot, but we’re getting rid of chemical cleaners, replacing plastic Tupperware-type containers with glass, and switching out all bath products and pretty much anything that comes in contact with the boys or with the food they eat. It will be a long process and my dad will call me a hippie, but we just can’t take any chances. What I’m learning is that these boys of mine do not just have autism. Their little bodies are sick. And anything I can do to lessen their “toxic load” may help them. And I’m not really interested in debating this because it’s not like removing chemicals from their environment or food will hurt them, so really, if you think I’m being stupid or overreacting, you can keep that to yourself. I’ve always said I would do ANYTHING for my boys. That includes giving up some conveniences and a whole lot of my time (making food from scratch, mixing non-toxic cleaners when I need them, etc), but it’s an investment in their future I don’t feel like I can overlook. When you’re the parent of a child (or two) with special needs, you often feel pretty helpless. I cannot make Nathan speak or look me in the eyes (I know because I have TRIED). I cannot force Liam to stop scripting or flapping his arms or bobbing his head incessantly. But this? This is an area over which I have a reasonable amount of control. And if it helps them in any small way, it will be worth it and then some.

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6 Responses

  1. Vanessa says:

    You are an amazing mother. I not only love you and your family, but I am also in awe of you.

  2. Shannon says:

    Have you had the house checked for toxic mold? Talk to Beth Lee/Caudle, she would be an awesome resource for you, as she has two children with life threatning allergies to numerous things. Her road to discovery all started with the finding of mold in their apartment….

  3. Suzanne says:

    Shauna, you and Jesse are awesome. That is all.

  4. Nancy says:

    I have been blessed to not have those particular problems with my children, but I have said numerous times that if I did, I hope I would have the good sense to start at home, with their diet, and with the junk in their environment. For what it’s worth, I, too, admire you and think you’re approaching this challenge in exactly the best way. Love and Best Wishes!

  5. Karin says:

    I am so sorry you are dealing with all of this. When the docs all said Belen needed to be switched to pediasure from my milk, I almost lost it. That can barely be called food. I already knew that all of my children have exhibited ecsema from exposure to allergens (although I strongly suspect petrochemicals in their food to be the main culprit), so I have cut down on their exposure load as much as I could. I knew we could not give it to Belen, the one whose brain needed some major nutrition. I researched, tested and researched some more. I belong to a couple of groups who have kids on the spectrum and with serious gut issues, but many of the professionals don’t know what is the problem, nor do they know how to fix it. It is so frustrating. There are some who are finally starting to see the gut/brain axis and making a difference, but they have not reached a tipping point yet. I know you are getting lots of suggestions for cleaners, etc. If it is overwhelming, please do’t worry about ignoring me, but when I was looking there was nobody and nowhere to find this info…I use soap nuts for laundry (and other “detergent” needs when I can). They are truly unprocessed nuts from a tree with natural surfactants. The only thing that exists in nature as far as I have found. I too stay away from most of the “homemade formulas” out there. We use food to heal as much as possible, but I believe that I have this epigenetic mutation (MTHFR) and that I have passed it to my children. Doing RAST testing will be more dependable than skin tests for his issues.(I am sure you already know much of this, you are a research powerhouse) Ick, this is kind of a ramble. Sorry.

    You are doing an amazing job and keep doing what you feel is right. You are entitled to revelation for your beautiful boys. Hope you are able to see some of the fruits of your labors soon. Your boys are as functional as they are because of YOU.

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